The Perfect Movie Venue for Teddy

I mentioned in my previous post that we had another memorable experience during our vacation week at the land. We discovered there was a drive-in movie theater about an hour from our land. That became our memorable, in a positive way, experience. I realize in our life that I need to clarify that memorable isn't always a good thing. 

Now we've attempted a family movie once before, when it was sponsored by Variety as a sensory-friendly family show. We knew we wouldn't be judged if we had to walk Teddy in and out of the theater or if he was loud or otherwise disruptive. It was an OK experience, although Dave spent the vast majority of the movie walking through the lobby with Teddy as he had no interest in staying in the theater. That's similar to other movies he's attended for school field trips. We typically see 5-10 minutes total of the movie (broken up into very small segments).

The gates for the drive-in opened at 7, and we arrived at 7:15 or so. There was already a number of vehicles there, so we claimed our parking spot. That's when Dave looked up the theater on Facebook and realized that shows start at dusk, around 9 p.m. Now, that's obvious in hindsight, but it's been a long time since I've been to a drive-in theater (like a couple decades), and Dave has never been. So we had nearly 2 hours of time to entertain Teddy before the movie even started. 

This was how Teddy enjoyed part of the wait ... and the movie.

However, we were able to do that easily between playing in the Tahoe, literally running around the field/parking lot and taking multiple stroller rides to check out everyone else. There were, of course, a few moments I looked like a crazy person when Teddy was pushing his own chair and then abandoned it to sprint in a different direction. But, all in all, the wait was enjoyable.

Mother Nature gave us a beautiful show before Peter Rabbit 2.

We were very fortunate to attend during a community event night where not only was the show free, but we also got a voucher for concessions. So we had a plethora of food, which was also a good form of entertainment.

Teddy watched most of the movie from his chair while munching on popcorn. He even chose to sit on the blanket by me for about 5 minutes before he decided to move to a different spot. He spent part of the movie watching from the Tahoe, sticking his head out the top. And we spent just a bit walking in his chair while listening to Peter Rabbit 2. 

This was the first time our entire family actually watched the majority of a movie together at any sort of theater event. It was the perfect way to watch a movie with Teddy, as we all enjoyed ourselves. Even though the movie ended at nearly 10:30, Teddy spent the first 10 minutes of the drive back to our land giggling and bouncing because he had such a great time. Then he fell asleep without a peep and slept until we got back at 11:30 p.m. Dave carried him inside, we gave him his final medicine and he slept through until 5:48 a.m. So, I mean, he slept in about 5 minutes for staying up so late.

It was such a good experience that Dave has already scoped out drive-in theaters near our house. There's two of them, so we'll likely try another family movie this summer near home. Dave's already joked that we'd ask our adopted daughters to join us. (And Dave's folks for the drive-in that's between our houses. The more the merrier to wrangle Teddy if needed.)

A Glimpse of the Fear

I tend to avoid politics here because this blog is intended to create awareness and share our story living with CDG-PIGN. Strong political opinions don't tend to mesh well with the open minds needed to learn. However, AJ's running buddy shared this story today, and it resonated with me.

You might be confused. My children inherited my pasty white skin. There's no reason I need to worry about my child being perceived as a threat because of their skin color, regardless of their intentions and the facts surrounding a situation. But every mom whose child has a skin tone other than pasty white likely has that worry, that their child will be judged in a split second based on decades and centuries of stigma and racism that may lie just under the surface even if it's not blatant. Will their child be perceived as a threat because he's out running? Because he has a cell phone in his pocket that he grabs? Because he is taller than someone? Because his skin is not white?

Still confused on why this resonates? Let me clarify. I don't worry about AJ ever being perceived as a threat. But let me paint a picture for you .... in another decade or two, Teddy will be a big guy. I don't expect he'll have the safety skills to be alone in the community, but I can see him still taking off for adventures. So maybe he goes outside unnoticed, wanders into someone's open garage door because that's an open invite and that someone calls the police. Teddy doesn't listen to the police's directions, doesn't answer their questions and ends up handcuffed or worse. Or maybe Teddy's outside walking, still with a gait that looks like he's had a few too many, and he doesn't heed the police's direction to stop. He approaches them, stumbling slightly, arms out for balance (or wait, is that a threatening move) and grabs at them to take their hand (or wait, is he going for their gun).

These might seem really far fetched, like I've spent too much time with my own imagination. But these are similar to headlines of people with mental illness who weren't able to follow police instructions or people with disabilities who were struggling to maintain appropriate social behaviors. These headlines are rarer than the racial ones. But they give me a tiny bit of perspective into what other moms with different skin tones might fear.

The point is that no mom should have this fear. No person should be afraid to wear a mask in public to ensure their own health and that of their community. We need to do better. All of us. No excuses for the older generation, no more small mindedness, no more indifference. We need to stop blaming others and calling for change in others without taking a hard look into our lives to see how we can do better. What are the biases we hold? What are we teaching our children? How can we change ourselves to start changing our world?

I Heart CDG

No, I really don't love CDG, but that's the button I wore the other week to AJ's school. AJ designed buttons for us to wear while we shared with his class about CDG and Teddy, so I proudly wore mine.

Every year since kindergarten, AJ and I have presented to his class to share a bit about Teddy and his diagnosis. I view it as a great opportunity to help his classmates understand not only a bit more about Teddy in particular, but also how to interact with people with disabilities. (It's easy. Like they're people.)

AJ talked about adapted equipment Teddy uses. 

AJ put so much effort into this presentation, with obvious love for his brother and a desire to help others understand Teddy. This was the first year where he did the majority of the talking with me adding a few things and guiding a few questions. He put together a Power Point presentation and did a very nice job with that. I showed a few pieces of Teddy's equipment, such as his chair and demonstrated the backpack carrier with AJ. We talked about how these things allow Teddy to do the things we enjoy as a family.

The kids listened so well.

Then we played charades with his class. AJ used his list for Valentine's to divide his class ahead of time into three groups, and he even created the charade ideas this year. They were definitely really tough, such as "No bullying" or "I love Oreos." We use the game of charades to help the kids think of what it's like to communicate without talking ... how frustrating it can be to not be able to talk and be understood but also how hard it is to guess what someone wants or means from a few gestures. One boy nailed it on the head when he said, "You can't just give up because Teddy can't tell you."

I have spent time in AJ's classroom on a regular basis, and I can say without any exaggeration that I have never seen his classmates sit or listen as well as they did for his presentation ... at least until he passed around the pictures after about 20 or 30 minutes of talking.

As long as AJ's teacher is willing, I hope to continue this tradition every year. I think it's nice for AJ to be able to share about Teddy with his classmates to build some empathy and understanding. I also think it's absolutely critical that children get exposure to others who are different to demystify things and help them understand that children with disabilities are still children who want to play and have fun in their own ways.

Neuropsychological Testing ... Yet Another Thing I Never Knew Existed

I've always thought of myself as a person who is fairly well read with a solid vocabulary, but I quickly learned there's a whole lot of words I've never fathomed that I now know well enough to use accurately. Take neuropsychological for example. It sounds like a made-up word, like someone smashed two familiar words like neurology and psychology together.

But it's a real word, and today I used it in the context of Teddy having several hours of neuropsychological testing done at Children's Hospital in Milwaukee. Essentially, it's testing to evaluate where he is from a skills standpoint done through parent questionnaires, teacher questionnaires, specific activities to complete in person under the guise of play and then evaluation of  unstructured play with familiar faces. The purpose is to help us best understand Teddy, how to support him and to advocate for additional resources at school as appropriate. If I'm being honest, the last is probably my biggest hope, although there's some behaviors and the non-existent toilet training that were also discussed.

The testing went perfectly well today, as in Teddy was agreeable, in a good mood and typical Teddy. So his scoring should be accurate and give a good snapshot of who he is. He traveled well for the 3 hours of car rides for the appointment, handled the several hours of testing like a champ and even managed to get through the waiting room without making a spectacle of us. (Trust me, my level of acceptable social behavior for Teddy is much different than that standard for AJ, so we still get looks everywhere we go.)

But it was tough. I cried as I filled out the questionnaire I had to do today because it just sucks to see in black and white all that your child cannot do that others his age can do. I know it because it's our reality every day, but we get used to our reality and ignore the stark contrast. Filling out a form and checking only 3 boxes on a list of 25 or more items that Teddy can do is demoralizing ... and that wasn't even the communication page, which is usually the area Teddy lacks the most.

This is one of the many pages of fun forms. 

Hearing that he's made progress since he was tested almost two years ago is great ... except that progress still puts him at less than a 2-year-old average across the board. My goddaughter who turns two in February will pass Teddy in every skill by her next birthday, and that just sucks. It sucks because I know how damn hard he works for every bit of that progress, the 5 years of therapy it's taken us to get to that functioning level, the things we do every day to help develop those skills and how much I wish I could make life easier for him.

I don't want it to sound as though I'm in denial because we know who Teddy is and how severely affected he is with his CDG-PIGN. At the same time, though, hearing the words intellectual disability is like a solid kick to the stomach. It takes all my willpower to keep the tears in my eyes from rolling down my cheeks .... not because it's a surprise, not because I don't know that already, not because the doctor is mean, but because that just hurts to hear as a parent.

As parents, we want the best for our children, and sometimes it's so hard to understand how this can be the best for Teddy. That's why there's others who help us see the light on these tough days without them necessarily realizing it. My aunt came to visit as we were scheduled for several hours of testing. We got a brief visit, and she entertained Teddy while the doctor and I debriefed. And when I got home, still feeling down, I read her Facebook post (and stole her photo):

"A funtastic play date with Teddy this morning when he was here for his annual evaluation. I can’t describe the joy I feel to see his face light up when I walk into the room. He is a blessing."

The smile that lights up a room.

Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

The Sweetest Brother

We've often said that AJ is a better person because he has Teddy as his brother. He's growing up with not only his brother's disability but also the circles of friends we've made with a wide range of disabilities. He floored me the first time he asked if I thought another child had special needs because of his stimming because I didn't even know he knew the phrase. It's been interesting, and heartwarming, to see how he processes Teddy's differences.

Last week, he nearly made me cry right before we walked into a store. AJ asked whether he and Teddy would live together when they were grown up. I said that typically brothers don't still live together when they're adults, just like his dad and uncles all live in different houses. His response was that he wanted to live with Teddy because he is his brother and he loves him and would miss him and he has special needs. Then, ever pragmatic, he said he would need breaks though. I asked how he'd get those breaks if Teddy lived with him. He said he would have a job outside the house and go shopping. (Can you tell how we as parents get breaks from Teddy?)

The reality is that if he chooses to live with Teddy in the future, I want that to be completely a freely made choice not an obligation. I want AJ to be able to live his own life and not be burdened with the responsibility of being his brother's caregiver. Trust me, that's something that I struggled with a lot when Teddy was first diagnoses. I even told Dave that the best-case scenario with Teddy's grim prognosis (a life expectancy of 3 years in the initial research paper we were given) was that AJ would have to take care of Dave, me and Teddy as an adult.

Then last night AJ shared his Christmas list to Santa. I think he had about 20 things on there, including typical things any 7-year-old boy might want:

• LEGOs
• Magic set
• Juggling kit (beginner)
• Tablet
• Phone
• $100 bill

Then there were things that aren't quite so typical:

• Play dough (for Teddy)
• Teddy to say his 1st word

A portion of AJ's Christmas wish list.

Dave was too busy chuckling about the $100 bill that he didn't hear the wish for Teddy to say his first word until I had AJ read it again. Talk about melting my heart. As parents, we're not the only ones who would love for Teddy to talk. AJ told me a few weeks ago that he wished Teddy could talk because he has lots of questions for Teddy. One of his questions is whether Teddy likes having AJ as his brother. I told him that I could answer that without a doubt that Teddy adores AJ as his big brother.

I'm sure there will be times, especially when AJ hits his teenage years, that AJ will drive me absolutely nuts. But, for now, he's the most incredibly sweet boy I could imagine. 

Music, Cookies and the Slightly Creepy Big Guy

Last weekend we went to a Christmas music program sponsored by Easter Seals. I happened to see a flyer for it shared on Facebook and thought both kids would really enjoy the music program, which was led by a music therapist. Music therapy is about the only therapy we haven't done with Teddy, largely because I never came across a program.

Teddy loved the music and all the people. AJ loved dancing and singing and playing instruments. I loved that since it was geared for special needs that I didn't need to apologize for or even explain Teddy. Teddy moved around the room, sitting in every open seat for a few minutes and sometimes other people's laps. He didn't know any of them, but he's a very social little boy who doesn't have any respect for personal space. In other settings, that usually requires at least a quick apology, redirection of Teddy or explanation to his newly chosen friend. This was somewhere he could just be himself without the need for that.

Santa Teddy was pretty excited to be there.

By far the music and the people were Teddy's favorite parts of the event. AJ liked decorating the cookies and doing a craft as well. Then we went to see the big guy.

Now Teddy historically is a bit freaked out by costumed characters. He's becoming much more intrigued by them, but it's the only time he respects personal space. His bubble goes from non-existent to at least 3 feet, preferably more.

Note the skepticism on Teddy's face. 

This particular Santa lilur Teddy in with his bells, and Teddy got close enough for me to sneak a picture. Then when Santa helped Teddy into his lap, Teddy climbed down and ran away. So AJ stayed chatting shyly with Santa until Teddy and I returned from a safe distance. We even managed a few photos of the four of us with me serving as the safety barrier between Santa and Teddy.

All we're missing is Dave, unless he's really Santa?

It was a phenomenal event just because it was so welcoming for everyone with excellent volunteers. I'll definitely be looking to see if we can attend again next year.

Just a Little Different

Tonight we read "Just A Little Different" by Gina and Mercer Mayer. I remember reading the Little Critter books as a child, and this is not my favorite in the series as an adult. (As a child, my favorite was probably the "Just My Dad and Me" one that my brother hated after I was born.) It's a story about a critter named Zach who is half turtle and half rabbit who gets left out because he's a little different.

One critter tries to include him, but the other critters aren't welcoming. The wise mom said, "Being different is good. Our differences make us special." So the one critter continues being his friend, finds common interests and eventually the other critters warm up to Zack.

Life lessons in a book about critters.

The lessons from the story could apply to anything that makes people be viewed and treated differently, whether it's race, gender, disability or any other factor. The moral is simply that differences aren't bad and that we can find common ground with others who may seem different.

My favorite part while reading the story tonight was when I asked AJ what he would do if someone told Teddy that he couldn't do something because he was too different. His response, "I'd stand up for him."

Sweet dreams, my boys. Sweet dreams.

What Would Be Your Super Power?

This week at work we were discussing the question of which super power you would pick if you could have any one super power? My response was selective mind reading. 

Now, my boss gave me crap about my response, saying things like that's creepy, perverted, twisted and the like until I stopped him in his tracks with my response:

"I have a 5-year-old son who has never spoken a word. I would pay a tremendous amount of money to know what's going on inside his mind."

As I continued to ponder this question I think I probably need more than one super power to be Teddy's mom:

Selective mind reading: With a non-verbal child, it's so challenging to know even his basic wants and needs. I have no way of knowing how much he understands. Sometimes I don't know if he doesn't understand or simply doesn't want to fulfill my requests. I have no idea of knowing what he's thinking, and I'd give most anything for that ability. Now, I say selective because I really don't want to know what most people are thinking.

Superhuman energy: To keep up with Teddy. He never stops. 

Superhuman strength: To wrestle Teddy, pick him up when he flops and drops and maneuver him where he needs to be, particularly when it's not where he wants to go.

What would be your super power?

Wires and Code

Last week AJ and I presented to his class about CDG and life with Teddy. AJ spent an hour making notes on things he wanted to share with his class, focusing on how CDG affects Teddy, ways people can communicate without talking and things Teddy does well.

I'm quite sure AJ lost his classmates when he talked about Teddy's code (aka genes), but I think they got my explanation that it's why some of us have blue eyes instead of green eyes or brown hair instead of blond hair. AJ also lost his classmates when he talked about Teddy's wires not being connected right. (That would be his neural pathways, folks.) But his classmates got the gist of the explanation that there's something that makes life different for Teddy, that he has to work harder to do things that are easy for them and that he's still learning how to talk.

I brought in Teddy's chair (almost as an afterthought) and backpack carrier. I explained that we use these because Teddy has trouble walking long distances and falls often, so these let us do lots of exploring or walk longer distances. I told them that carrying Teddy in the backpack let's us go hiking places where his chair can't go. (Although, trust me, we've taken his Kimba Kruze a lot further on trails that most people would and then just switched out to the backpack carrier. Seriously, who's going to steal a pediatric transport wheelchair 1.5 miles up a trail?)

We shared a picture of Teddy with the class to show his great smile since that was one of AJ's notes. AJ did a nice job explaining ways that people can communicate without talking, whether sign language, gestures or Teddy's iPad.

I tried to end our discussion that even though someone may not respond at the playground when they say hi or may not be able to do everything just like them, that all children want to play and have fun. I told them that even if a child like Teddy doesn't say hi back to them that they can still include that child in their game.

Twinning for a good reason.

Then we divided the class into groups to play charades. I put together simple phrases like "Hi!" or "I want to eat." to help the kids understand how they can send a message without talking. Some of the charades were really easy, and some were more difficult (and my group tried to cheat by listening to what I was telling the person who was acting).

I'm grateful that AJ's teacher gave us the time to share with her class. I know it's important to AJ to educate people about CDG because he wants to share his knowledge and that he loves to talk about Teddy. I like raising awareness of CDG, but I realize a group of kindergarten students isn't going to remember much about a particular diagnosis. My hope and goal is that it raises more awareness and acceptance of others who may be different. These kiddos will be AJ's peers and friends. Even though Teddy won't be at their school, I want them to be accepting of Teddy and all children with different needs.

And I couldn't be more proud of AJ. He loves his brother fiercely and advocates for him, even though he doesn't know that word ... yet.